Glenn
Ferrell of Boise, Idaho, has plenty of experience
on how disability affects families. His fourth
child, Noah, was born with Down syndrome, and
his first wife, Barbara, died from Huntington’s
disease.
As
for Noah, “my wife was 39 when he was born,”
said 57‑year‑old Ferrell in a telephone
interview. “And we didn’t find out (about the
Down syndrome) until the day he was born.” Down
syndrome is caused by a defective embryo cell
division creating an extra No. 21 chromosome.
Affecting 350,000 Americans, it is the nation’s
leading cause of mental retardation.
The
Ferrells were concerned early on about Noah’s
development. He weighed only nine pounds after
eighteen months, couldn’t walk until age three,
had slurred speech and wasn’t potty‑trained
until seven.
With
all his physical challenges, “there was still
a joy about having him around,” said Ferrell
of the early years. He and his wife home‑schooled
Noah and his three siblings, and by having Noah
around “his siblings learned a great deal about
compassion and about people who were different.”
As
Noah grew, Barbara Ferrell developed Huntington’s
disease. A National Institutes of Health Web
site calls Huntington’s a “genetically programmed
degeneration of brain cells.” The degeneration
causes uncontrolled movements, loss of intellectual
faculties, and emotional disturbances.
Said
Ferrell, “Barbara wasn’t able to walk the last
three years of her life and used a cane several
years before that. She lost the ability to speak
clearly those last years. In the last year she
lost control of her bodily functions before
wasting away to 75 pounds.” She died at age
55, just four years ago.
The
death greatly affected Noah. “He observed (his
mother dying) at home and wasn’t able to articulate
what was going on,” said Ferrell. “I often found
him crying alone in a corner. From then on he
began talking a great deal about death, which
he’d never done before. He even became sensitive
to the death of
pets. Occasionally even today I will find him
looking at her picture, or while riding down
the
road he will say he misses his mom and begin
to cry.”
Noah
was 16 when his mother died. Ferrell, the pastor
of a church, eventually remarried and moved
from eastern Kentucky to Idaho, in part so Noah
could have certain social services. Noah and
his new mother get along fabulously.
For
more, see danieljvance.com
. This column made is possible by a grant from
Blue Valley Sod, bluevalleysod.com.